If I could do nothing but help people with IC recover, I would...but we desperately need more tools, and more effective treatments. I am hopeful that the clinical trials, currently underway, using LYRiS, will lead to swift approval, and relief for millions of people. Meanwhile, read the book, try the holistic diet, lifestyle, and comfort treatments discussed, try to get support from your family, friends, and community, and hang in there... A quick review of things to check off your "to-do" list: --Make an appointment with a specialist, either a urologist, uro-gynecologist, or chronic pain specialist --Ask for, and in fact insist on, a referral to a physical therapist who specializes in evaluating and treating pelvic floor dysfunction, which is present in most people with IC --Eliminate possible triggers by testing for food allergies and sensitivities, Lyme disease, and occult bacterial infection --Make sure that your pain is adequately treated, and that your practitioner understands that IC can be, for some people, one of the most severe forms of pain we experience. If you have IC, untreated pain worsens your condition and can cause significant up-regulation of your nervous system, making the pain harder to control. --Whenever seeing a new physician, always take along a copy of the latest American Urological Association (AUA) treatment guidelines for IC. --Do not allow ANYONE to conduct a potassium sensitivity test on you for routine diagnosis of IC. There may be other reasons to do this test, but the AUA no longer recommends it for routine IC diagnsis. Instilled potassium solutions can provoke long-lasting and painful flares. Your doctor needs to know this. --If you do try Elmiron to help repair your bladder lining, make sure you give this medication a fair shot time-wise. Some people take up to six months to experience the full effect. But if the side-effects make this impossible, discuss safe and more tolerable alternatives with your physician. --If your pain and fatigue make discussing your health with a new physician difficult, take along a patient advocate - a friend or family member who understands what you are going through. You may even want to hire a professional patient advocate (often a nurse who fills this role) in your community. --Insist on fair, competent, effective and compassionate treatment. No one has the right to make you feel worse than you did before you entered their office. Walk away and seek out another practitioner.
Posted on: Wed, 03 Jul 2013 23:52:20 +0000
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